As a hospice social worker I considered it one of my roles to remind patients and families to take moments to slow it down; to look around at the person they were about to lose and the people who were about to experience the loss. I knew it was time that they wouldn’t get back. I learned this from my own experience of caring for a dying loved one before I had any grasp on the permanence of death.
It is so easy to get caught up in the doctor’s appointments, medicines, treatments. How do they feel now? How much breakfast did they eat? How much did they drink today? Meanwhile, time with this person is passing you by.
There is no perfect suggestion for managing your time when enduring the stress of illness and anticipatory grief. Although popular songs and movies may tell you otherwise, no, a person doesn't need to go skydiving or meet a celebrity in order to have meaningful moments at end of life. For some, illness or decline is rapid - in these cases “slowing it down” may mean just a minute of connection shared with another. Regardless of the amount of time, my wish is that anyone can find even a moment of meaning. Here are some ideas of things that can be done to “slow it down”, bring a sense of purpose to the person who is sick and create meaningful connections to the people around them.
I can’t begin to describe the part of your soul that is touched when you hear the voice of a loved one you have lost. These days there are children’s toy animals and books with voice recording features. A message of love could be recorded in the bear. A bedtime story can be read through a book. Personal recording devices can be purchased beginning around $30, allowing someone to share thoughts or stories. It may be that there are things they cannot bring themselves to say in person to someone else. Or, they may think of things they want to share when they are not in the presence of family – this can help to ensure no words are left unsaid.
Routinely I would assist patients to fill out cards for future milestones like birthdays, anniversaries, or weddings. Small mementos can be left for certain events (ex. a watch to be given on graduation).
Find a tree in the yard or a piece of wood furniture and if the person is physically able, have them carve their mark on it.
Does the person love to cook? As an activity together, write down their favorite recipes perhaps even creating a whole recipe book.
No money required – the spouse of a patient once took out a pen and paper and asked, “tell me everything you love”. He proceeded to write every color, every song, every holiday tradition, movie and food that brought them joy. Many of these things were then incorporated into the memorial service.
The hospice I worked for had donated blankets made for kids. I routinely carried a few in my trunk; pink with hearts, green with soccer balls. For a person who was too sick to do any kind of shopping, even to lift their head, they could pick one out for the young child in the family. It could then be given to the child as a gift, letting them know that every time they wrapped themselves in that blanket it was “a hug from grandma” or “a hug from Dad”.
I've already shared my belief in the power of present silence in Lesson’s From Danny. But I get that it can be uncomfortable when you run out of things to talk about. I’ll let you in on my favorite question: “What is something I don’t know about you?”. No matter who it is, there will be some new fact, some antidote that comes up. Offer to also share something about yourself.
Often those who are dying are confined to one particular space. It may be the bedroom or a room in a nursing home or hospital. If a person is able to remain at home, it was very common for a hospital bed to be placed in the living room as opposed to the bedroom. This way, a person may feel less isolated and can observe and be present to the "going-on's" of the household. But some may prefer the quiet and refuge of a bedroom. Either way, you do have the ability to transform a room no matter where they are. Pictures can be hung. Cards or encouraging notes can be put up. Soft lamps as opposed to harsh lights can be used. Mementos from home can be brought to a hospital or nursing home. Allow the person who is sick to direct how the room is decorated if they so desire.
One of the most common questions I received was whether or not that person was going to live until their next birthday or favorite holiday that was coming up. I'd hate for a person to miss out on the festivities of a particular holiday all because the planned activities couldn't simply occur on another day. If there is a question of time, I'm not sure there is a reason why someone can't celebrate their birthday a week earlier. I'm not sure it matters whether or not Christmas gifts are opened on the 21st instead of the 25th. This person's expected timeline of their life has been altered by means outside of their control, I think this gives them the right to make some changes to the particular days within their new timeline.
I am going to wrap this up with a disclaimer that while it is important to find moments of meaning, they should not be forced. Trying too hard to make each moment special can cause stress or make time spent feel less than genuine. For some, so much of their normalcy has been taken away, they may long for a visit in which no special memories are trying to be made. As hard as you may try to make a moment or visit special, the person who is ill may be too fatigued to engage. You may bake a special apple pie only to be met with the hand up and head shaking side to side because they aren’t hungry. These times hurt but are to be expected. Being present in the moment also means feeling the episodes of disappointment that contrast what we wish we had. Caregivers may have grand ideas of things they'd like to do for the person who is sick, but their responsibilities, grief or fatigue may not allow them. That is ok. Again, it is about bringing it back to the moment. And often, the moments are full of heartbreaking reality. It’s a tricky equation of seizing opportunities for special moments of intimacy + being present to soak in moments of normalcy + being kind to yourself.
Are you facing the serious illness of a loved one? I’m happy to talk with you more individually about ways to create meaning and prepare for loss.
